Share this:

Like this:

I intend for this to be a programming and technology blog, so please forgive a rare excursion into matters political. This matter affects me and my household in a very personal way, so I feel rather strongly about it. I will return you to my regularly scheduled programming shortly.

Those of you who know me know that my wife has been struggling with Multiple Sclerosis for many years (it’s no match for her, you should know). Much progress has been made in slowing the disease’s progression, but so far, there have been no treatments to counteract the symptoms — at least none with high-quality studies demonstrating efficacy. Well recently, two doctors from the Multiple Sclerosis Center at Rush University Medical Center in Chicago have gotten FDA approval for such a drug, after nearly 30 years of work. For some time the drug was available only in special cases, and from specially licensed compounding pharmacies, but it is now generally available. Here’s a Chicago Tribune article about it, and you can find out more by Googling “Ampyra“:

(Note: it’s not obvious, but the article is split into four pages, with page-by-page links at the bottom.)

This is Big News, and it made me stop and reflect on how new treatments like this come into being.

Effective treatments don’t have to exist. There is no magical fountain of new cures, no tree that sprouts forth new medical knowledge if you just water it, and there is no cure fairy. Research-intensive drugs are incredibly difficult and expensive to develop. This one took uncommon dedication, unwavering belief, and a ton of private investment fueled by little but hope. It also took the commitment of major resources and capital by a pharmaceutical corporation, towards a project with high risks of a small or negative payout.

It’s easy to feel embittered and burdened by the high costs of advanced drugs, and it’s easy to feel a sense of entitlement to their benefits when we know they exist. With a little effort and rhetorical license, I could weave our situation into an anecdotal sob story that would make people say “somebody has to do something about this.” And let’s be honest… nobody wants to see anyone else denied medicines because they lack the means to afford them. But it’s good to stop and marvel at the fact that the medicines of today even exist. Much money and effort go into pharmaceutical research projects that result in nothing. Before anything like this comes into being, countless people have to finance an intimidatingly expensive education — one that requires formidable effort to complete — and that just gets them to the starting line. Many of them don’t succeed in getting jobs in their field of choice. After some do, lots of brilliant people need to decide to embark on research that may or may not go anywhere before anything new gets created. These people need labs, equipment, collaborators, access to others’ research, and more. They also need to pay off student loans, eat, have a roof over their heads, and have competent management to help organize their efforts effectively. All of these people have retirement plans to be funded, as well as their own healthcare plans.

When they finally do find a fruitful line of research, their discovery must go through a brutal series of safety tests and regulatory approvals. Once over that hurdle, it takes efficient manufacturing capabilities and distribution channels to get the product in our hands. Then they need to retain lawyers and secure staggering amounts of liability insurance to handle lawsuits over potential side effects — and there will be lawsuits; sometimes they’re merited, sometimes they’re not, but there’s no avoiding them either way.

It’s so easy, tempting, natural even, to feel like I have a right to any medicine, at a price within my means, simply because it exists and I need it or my family does. But what does that really mean? If I have a right to a product that I cannot afford, from whom shall I take it? Medicine is not a ubiquitous natural resource like air. It is the fruit of many other people’s efforts and investments. If this drug costs $12,000 to discover, produce, insure, and to create enough profit to incentivize its producers and to provide for investment in the next 100 research efforts, but I have only $100 to spend on it for whatever reason, do I have the right to take $11,900 away from the people who bring it into existence? If they refuse to make it for $100, can they be punished for violating my rights? If they quit and move to a more lucrative industry, can they be dragged back to manufacture the product I have a right to? What is their 30 years of effort worth, and now that we know it paid off, would it be right for us to just seize the results from them, or to tell them how much they may value those 30 years at?

If we don’t take that approach but we still insist that this product is something we have a right to, then can I take it from some arbitrary person who can afford it better than I can? And if that’s so, can someone with lesser means than me take enough from me to pay for a product I can afford and he cannot? Is it just and moral to say that Mary cannot have an advanced robotic prosthesis at all unless Sue can have free casting and X-rays when she breaks her leg? Logically, the only way I can have a right to a product — something produced by others — is either to have compulsory labor (people can take products from those who make them, and force them to make them if not enough product exists to satisfy my right), or to say that nobody can have something that everyone can’t have — the logical result of accepting the notion that the more-well-off must pay for whatever the less-well-off want or need but cannot afford. You could draw some arbitrary limit on how much property you can take away from someone, but that’s effectively saying that one’s right to income and property is subject to the ever changing whim of politicians.

Both of those paths lead directly to a world where miraculous new treatments stop coming into existence. I don’t think any rational person would argue that they lead to ever-increasing affordability of ever-more-advanced treatments, at least.